Sick and tired of being sick and tired

[GretchenWienersHair]

Feeling a little sorry for myself today so came on here for some support! I’ve had a really rough year with Crohn’s disease and had to take a significant amount of time away from work. I went back to work a couple of months ago, feeling much better than I have been but still not my usual self. I’ve been doing that annoying thing of pretending I feel fantastic when people ask, even though I don’t (does anyone else do this? It’s just exhausting to keep explaining that there is not really much thing as feeling “better now” with Crohn’s, so it’s easier to just be perky and say “yes” when people ask!)

Over the last couple of weeks though, things genuinely have started to pick up and I saw the light at the end of the tunnel. However since yesterday I have been feeling really rough again and just want to cry. I have such a busy weekend and don’t want to cancel any of DS’s plans as he’s been so happy I’ve been “better” and things are slowly getting back to normal, but all I want to do is stay in bed!

I don’t really know what I’m asking for her to be honest. I’m just so fed up of needing to choose between resting and disappointing others, or pushing through and exhausting myself even more.

I absolutely feel your turmoil. The dilemma is frequent and never gets to be an easier choice because if you choose to put yourself and your health first you feel majorly guilty especially if it's your child You're letting down. How old is your DS? I think it's probably reasonable to set his expectations of what you're physically able to do, maybe force yourself through this weekend since he's already so excited but after that explain to him that sometimes your sickness is unpredictable and things you really want to do with him may not be possible for you and that you understand how disappointing that is for him but you're trying your absolute hardest to enjoy activities and events with him when you can but you also need to rest to make sure you're healthy for him.

I hear you and sympathise. Not the same disease but I have been tired for months. I am semi retired and do a mix of voluntary and self employed work. If I wasn’t at this stage of my life I don’t know how I would cope.
It is so frustrating when you have been feeling better and it then hits again, like someone kicking you back down. Would it help if you admitted to yourself that you only have a finite supply of energy and if you don’t conserve it you will run out and risk having even less energy the next day. Could you talk to your son and tell him you might not be able to get to all the activities planned, let him pick what matters most? Can someone else take him to something or bring him home, it buys you some uncommitted time which you can use to crash. Have a plan for any time you get, bed if that is most restful or couch with a throw. Tea or coffee or hot chocolate, book, box set etc. As that becomes your habit you will relax more quickly and feel the benefits.
I hope you feel better again soon.

Thank you so much for your replies. I don’t know how I managed to miss them yesterday; my apologies! You’re both right about needing to be honest with myself. I have taken that advice today and reached out to a friend to help out with taking DS to a party today, and asked for an extension on a work deadline. I don’t think I would have done that had I not read your replies first!

Long time Crohns sufferer hee. Have you had your meds reviewed recently?

Good, the first steps are the hardest and you have done that.💐.

I have! I started a new injection earlier this year and, although it’s taken a while to kick in, seems to be working now according to a recent colonoscopy. I think I just have good days and bad days according to external factors like stress, sleep or what I’ve eaten that day.

Is yours generally managed quite well?

Thank you!

I am quite resistant to medication it would seem and apart from steroids or Humira it was a rolling nightmare. Enter anal cancer and a stoma - my worst nightmare was the biggest blessing ever. Do keep on at them
to keep reviewing and checking things though.

Oh gosh, have you recovered from the cancer? I’m so sorry. This must have been terrifying. It’s a worry with Crohn’s as all symptoms are just put down to being the Crohn’s. Was yours diagnosed quickly?

It’s actually Humira (or another brand) that I’m on now. It seems to be working fine, I just still get bad days here and there. I had a heavy course of steroids this year which sorted most of my gut but there’s just one pesky bit of inflammation which just won’t go down, which is probably why o still have some bad days.

Sympathies OP. Different autoimmune disease but on biologics and have picked up another bloody infection and I’m so tired of it. Feel like I’m stop start at work because of it.

I’m so sorry about the infection. Is it something which can be treated with antibiotics or do you have to ride it out?

I’m with you on the work front! I had a load of time off work this year and I’m currently sitting on the loo having been here for the last 40 minutes (sorry, TMI but you know how Crohns goes!) I know I need to call in because today is going to be rough, but I’ve only just gone back in and don’t want to piss my manager about! I really don’t know what to do.

@GretchenWienersHair I’ve been on antibiotics for 24 hours and already feel better- cue DH saying I told you so that I should have got them sooner. So hard to tell if chest things are viral or not though.

I need to do a site visit today and then I’m going to do as little as possible. Luckily my boss is on annual leave so I feel like there’s a bit more leeway and can hopefully be more productive on Friday to catch up. It’s so very hard to explain the nature of autoimmune diseases to people as they generally don’t get it.